Who am I?
Hi, I’m Lynn, I’m 45 years old. I’ve been diagnosed with CCI, hEDS, Traumatic Brain Injury, Occult Tethered Cord Syndrome.
I was a professional musician, pop superhero and I’m an actress. Currently, I’m a Patient Advocate and Company Consultant for my own medical conditions.
How I got diagnosed
My doctors were simply attributing my symptoms to my EDS and recommending physical therapy. In the summer of 2021, a physical therapist, told me she thought I had CCI. I had wondered about this, for many years, but had been dismissed in gaslighted by my Boston doctors as a whole… Even my neurologists. It was actually a PT that motivated me to seek opinions outside of major Boston hospitals. That is when I flew to MUSC, medical University of South Carolina, for an outside opinion. Unfortunately, MUSC dismissed me as a patient before I could get surgery… Simply because they found Medicaid in my Medical history. In 2022, they started a new hospital wide policy dismissing all patients with any Medicaid on their history.
I got diagnosed in 9/2021. My CCI was listed on both medical reports, upright MRI and motion x-ray. I was officially diagnosed by a neurologist at MUSC, Dr. Sunil Patel.
How my CCI started
I was having chronic migraine, daily chronic pain, headaches, dizziness, nausea and vision problems. I believe things may have started after the Boston marathon bombing in 2013, which I survived with brain injury, neck injury, shoulder injuries and low back injury. I also had a disabling stage accident in 2006.
I still have chronic migraine, chronic pain, daily headaches, dizziness, nausea and vision problems.
Treatment for my CCI
My CCI diagnosis put me on my current path seeking treatment. I tried physical therapy first, but my PT felt forced to dismiss me, as my CCI symptoms were triggered by her exercises. I am unable to find a Neurosurgeon, in any major Boston hospital so far, who will accept either my upright MRI or DMX/Motion x-ray imaging or the! reports showing that I have CCI. I am in communication with two doctors in New York, Dr. Greenfield and Dr. Bolognese, hoping that they will assist me in what CCI treatments to try first. Personally, I always see surgery as a last resort.
So far I have tried so many treatments: physical therapy, acupuncture, yoga, meditation, massage, trigger point injections, prolotherapy, supplements, detoxification, medications. Unfortunately, none of these cured my CCI.
My life now
After my stage accident, I had to retire from my job as a professional musician, Pop Superhero, but went back to school to retrain as an actress. After the Boston marathon bombing, I was forced to stop going to weekly auditions and am now limited to D player jobs and short films.
There are so many things I can’t do anymore… It’s too long to list! I can’t do basic physical therapy, without triggering all my symptoms. I can’t lift or carry anything over 5 pounds. I can’t even bend over, to tie my shoes or pick up my dog, without triggering all my symptoms at once! I have learned to focus on what I CAN do… Not what I can’t.
So I do enjoy my newfound calling as a patient advocate/consultant. Advocating gives my life a greater sense of purpose!
I am most passionate about volunteering as a patient advocate and consulting as a patient and patient expert in my medical conditions: brain injury; chronic migraine; EDS; fibromyalgia; dysautonomia; eczema; mast cell disease; hearing loss; CCI; FND; PTSD.
My family has never understood my invisible injuries and invisible illnesses. My partner tries, as best he can, but I think he is simply feeling sorry for me. I am lucky to have any support at all and realize that some people have none.